MIND THE GAPHow data, digital and - technology can help Scotland recover from Covid-19, transform health & social care and boost our economy
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
MIND THE GAP How data, digital and technology can help Scotland recover from Covid-19, transform health & social care and boost our economy
Mind the Gap
4
Mind the Gap
CONTENTS
1 SUMMARY
7 INTRODUCTION
Recovery and Resilience after COVID-19: Ambition,
Innovation & Investment in Health & Social Care
15 CHAPTER 1
Data Saves Lives, Time & Money:
Social & Economic Gains of Closing the Data Gap
23 CHAPTER 2
Strategy
28 CHAPTER 3
Culture & Leadership
34 CHAPTER 4
Skills
41 CHAPTER 5
Infrastructure
45 CONCLUSION
Our Key Recommendation
47 ACKNOWLEDGMENTS
5
Mind the Gap
SUMMARY
Closing Scotland’s Data Gap
COVID-19 has tested Scotland like perhaps never before. From the NHS to care homes to community
pharmacy, health & social care are on the frontline of our emergency response to the global pandemic. The
sector has made important progress in harnessing data, digital and technology to tackle the virus – particularly
through the Test and Protect strategy, the Protect Scotland app, the expansion of online video consultations and
more timely ethical data sharing.
But there is much more still to do. Even before the pandemic, Scotland faced a series of major and escalating
public health challenges and crises which will continue to damage our society and the economy if they are not
tackled, preventing our nation and its people from achieving our potential.
We need to learn the lessons of COVID-19. A healthy society is essential for a healthy economy. Access to real-
world health & social care data has informed and enhanced decision-making and policymaking throughout the
crisis, helping to identify and control outbreaks, develop appropriate restrictions and roll out vaccines.
Long-term, strategic investment in health & social care innovation is critical. New and emerging technologies –
enabled and underpinned by ethical, robust and secure data – can and should play a vital role in transforming
health & social care.
Nations which recognised these priorities long before the pandemic – albeit with different political and health
systems, such as Singapore, South Korea and Taiwan – have better utilised data, digital and technology to
respond more swiftly and more successfully to the virus. Their action and investment has saved lives, protected
livelihoods and minimised disruption to daily life.
If we act now to close Scotland’s Data Gap between the health & social care data we have and the health &
social care data we need, there will be big social and economic gains for everyone. As we look to recover and
build resilience from the COVID-19 crisis, it has never been more important.
Scotland’s Data Gap
Health & Social Care
data we collect, utilise or share
V
Health & Social Care
data we need and could collect,
utilise or share
1
Mind the Gap
Our Vision for 2024
Our vision is of a health & social care sector transformed by the Fourth Industrial Revolution, harnessing data,
digital and technology to close Scotland’s Data Gap, deliver big social and economic gains and improve public
health to among the best in Western Europe by 2040.
We believe Scotland can become a world leader in data, digital and technology in public health, attracting health
& social care professionals and researchers, entrepreneurs and innovators, investors and industry, from around
the world.
We believe Scotland can build on our strengths across the public, private and third sectors to close the Data
Gap. Our nationally integrated, publicly owned NHS is globally unique. Our data, life sciences and tech sectors
are diverse, growing and supported by a renowned ecosystem of world-class academics, research universities
and new centres of expertise and innovation.
However, in the global recovery from COVID-19, Scotland has a narrow window of opportunity to establish
itself as a world leader and to win the global race for investment, jobs and inclusive growth to boost our
economy.
Researchers and industry are primarily interested in insights from aggregated, anonymised data at a regional
and national level, rather than identifiable health & social care data at an individual level, which could potentially
breach personal privacy if not used in the right way. Personal health & social care data must be ethical, secure
and anonymised as far as possible with robust and transparent governance arrangements. Data must be
trustworthy
Social and Economic Gains
Data saves lives, time and money. Harnessing and sharing data, digital and technology in health & social care can
deliver big gains for patients and service users, staff, communities and taxpayers through improved care, better
outcomes, higher productivity, lower costs and new jobs.
Scotland’s health & social care data could be worth an estimated £800 million every year for our society and
our economy. Big Data Analytics could also deliver an estimated £5.4 billion in savings for NHS Scotland, 38% of
its current budget and three times its predicted budget shortfall by 2025, which could be reinvested in health &
social care. The health tech sector could be Scotland’s next key growth sector to rival FinTech.
Overview of Social and Economic Gains
Social
J Saving lives and delivering better outcomes for patients and service users
J Improving physical and mental health, wellbeing and quality of life
J Reducing health inequalities
Economic
J Attracting investment and creating jobs
J Reducing economic inactivity and sickness absence
J Increasing productivity and inclusive growth
J Easing demand pressures on health & social care staff and services
J Delivering value and protecting the long-term future of the NHS
2
Mind the Gap
Four Pillars of a New Data Strategy for Health & Social Care
We welcome the Scottish Government’s commitment in the Programme for Government 2020/21 to ‘create
a dedicated data strategy for health & social care for the first time’. We believe that this new national Data
Strategy – due to be published later in 2021 – should be backed by a Health & Social Care Transformation Fund
which invests in strengthening four key pillars to close Scotland’s Data Gap:
STRATEGY CULTURE & SKILLS INFRASTRUCTURE
LEADERSHIP
Developing Empowering Investing Modernising and
an ambitious, leaders to drive in reskilling, upgrading health
collaborative change by building upskilling and & social care
and innovative an ambitious and lifelong learning infrastructure
national approach collaborative to develop a to build a single
to harnessing national culture health & social national data
data to transform of innovation in care workforce architecture
health & social data, digital and better equipped which integrates
care which technology. to harness systems, enables
maximises social data, digital and ethical data
and economic technology. sharing and
gains. creates secure
digital health
records.
The Scottish Government is leading the development of the new Data Strategy. However, the new Data
Strategy and the Transformation Fund should also be designed and delivered in partnership with the diversity
of partners and stakeholders across the sector – especially citizens, patients and service users, and including
the voice of staff and industry – to build understanding, trust, support and agency across our society and our
economy as the foundation for the future of health & social care.
SCOTLAND’S DATA STRATEGY FOR HEALTH & SOCIAL CARE
Strategy Culture & Leadership Skills Infrastructure
Trust & Transparency
3
Mind the Gap
Strategy
Successful small nations are more agile and can unite behind a national mission. Scotland is small enough to
link and manage health & social care data together nationwide, while also big enough to provide a demographic
critical mass for research and insights by global academia, industry and others.
But Scotland’s historic approach to health & social care data innovation has often been incremental. There has
been a failure to scale-up nationally. Despite the extraordinary spirit of partnership and collaboration during the
pandemic, the health & social care landscapes remain complex, fragmented and siloed. The lack of a common
commitment or approach to issues such as data standards or governance is a barrier to collecting, sharing and
harnessing ethical and secure data.
The new Scottish approach should be focused on driving forward innovation at pace and at scale for the benefit
of all. The new Data Strategy for Health & Social Care in Scotland will be an essential part of our recovery from
COVID-19 and must be aligned – in its design and in its delivery – with Scotland’s many other relevant strategies
for the sector.
Culture & Leadership
Change should be people-led to overcome cultural barriers. NHS Scotland, service providers and health &
social care professionals should be risk-aware rather than risk-averse, flexible to new ways of working and open
to collaboration for the common good with public, private and third sector partners. There should be strong,
joined-up leadership at a political level and across government and the public sector to drive change and build a
national culture of innovation.
Health & social care needs to attract, retain and nurture data champions at all levels and in all areas, as well
as act to increase workforce diversity. Senior leaders and decision-makers need to have the personal and
professional experience and expertise which the sector needs to understand, support and implement cultural
and technological change.
There needs to be more action to invest in data research and innovation, identify and spread best practice and
accelerate national scale-up. Public Health Scotland’s Data Driven Innovation directorate could act as such a hub
for Scotland’s national culture of health & social care data innovation.
Skills
Health & social care’s workforce has proven extraordinarily flexible and resilient in its emergency response to
COVID-19. But they will need support to adapt to the disruption of the Fourth Industrial Revolution, working
alongside technology to harness data. Existing roles will change, new ones will be created, some may be
displaced. The health & social care workforce of the future will need to be data and digital ready. 90% of all NHS
jobs will require digital skills by 2040.
Everyone will need to be data and digital literate, as well as understand data privacy and security. Many will
need to interpret data to gain insights and deliver applied intelligence. Some will need practical skills to service,
maintain and protect tech infrastructure. The sector’s informatics workforce of data scientists and analysts will
require investment to expand Big Data Analytics capacity.
Reskilling, upskilling and lifelong learning for all health & social care workers, at all stages and in all careers will
be essential. Developing knowledge and skills in data, digital and technology, and exploring related ethical and
safety issues, should be a core part of all health & social care learning, from undergraduate and postgraduate
degrees to work-based learning and CPD. Employers and educators will have to keep pace with change and
refresh curricula more frequently.
4
Mind the Gap
Infrastructure
Health & social care needs the right physical and digital infrastructure to close the Data Gap and achieve our
vision. The sector lags others in the use of technology. Much of the sector is burdened with archaic, inadequate
or obsolete technology and equipment. Many facilities and workers struggle without basic software and
hardware or with poor connectivity. The NHS estate and Scotland’s wider health & social care infrastructure
urgently requires significant investment to get the basics right, while also unlocking opportunities to prepare for
an accelerated transition to a high-tech future.
The sector’s myriad systems do not link to or communicate with each other, preventing access to or ethical
and secure sharing of data. The openness, integration and interoperability of data sets and systems to create a
single national data architecture – underpinned by common data standards – would facilitate ethical and secure
data sharing at a national level and the creation of a single, comprehensive digital health record for everyone in
Scotland across primary, secondary, tertiary and social care. The ongoing project by NHS Education for Scotland
to build a National Digital Platform for health & social care is an important first step.
Fully integrated personal data giving a holistic picture of patients’ and service users’ experiences and outcomes
could then be ethically and securely accessed by health & social care professionals to enhance patient care
and better inform clinical decision-making for the short-term benefit of individuals. Consistent, high quality
aggregated, anonymised Big Data at a national or regional level could be accessed by researchers and innovators
for the long-term benefit of all.
Our Key Recommendation
J The Scottish Government’s new Data Strategy for Health & Social Care should be
backed by a Health & Social Care Transformation Fund which invests in Strategy,
Culture & Leadership, Skills and Infrastructure to close Scotland’s Data Gap.
5
Mind the Gap
6Mind the Gap
INTRODUCTION
Recovering from COVID-19:
Innovation, Resilience &
Transformation in Health &
Social Care
COVID-19 has tested Scotland like perhaps never video consultations has expanded massively to
before. We have all made difficult sacrifices to protect enable patients and service users to consult GPs
and help each other. From the NHS to care homes to remotely and safely.4
community pharmacy, health & social care are on the
frontline of our emergency response to the pandemic. But there is much more still to do.
Our doctors, nurses, social care professionals, Learning the Lessons of COVID-19
pharmacists and other key workers across the health
& social care sector have given so much in the COVID-19 has underlined the benefits of long-term,
fight against the virus, demonstrating extraordinary strategic investment in the innovation, resilience
courage, commitment and skill. The sector has and transformation of health & social care and
responded to the immediate challenges and the importance of access to real-world health &
imperatives of the crisis by making important progress social care data. We need to learn the lessons
in harnessing data, digital and technology to tackle of the pandemic and from the success of other
COVID-19 and protect public health.1 nations – including those in different contexts and
with different political and health systems, which
Test and Protect – Scotland’s system for Scotland would not and should not replicate.
implementing its ‘test, trace, isolate, support’
strategy – has gathered and utilised large quantities Singapore, Taiwan and South Korea, for example,
of data to monitor, suppress and prevent the recognised this as a national priority long before
transmission of the COVID-19 across the country, COVID-19 after the SARS outbreak in East Asia
as well as informing decision-making about in 2002. They have had much greater success in
restrictions and support for workers, businesses and suppressing or even eliminating the virus, as well
communities.2 The rollout of the Protect Scotland as in minimising disruption and negative impacts of
app has enlisted over 1 million citizens to help track the pandemic on their public health, societies and
and control the virus.3 Access to NearMe online economies.5 They have harnessed data, digital and
1 www.digihealthcare.scot/wp-content/uploads/2020/07/Scotlands-digital-health-and-care-response-to-Covid19_JUNE-2020.pdf
2 www.nhsinform.scot/campaigns/test-and-protect
3 www.protect.scot
4 www.nearme.scot
5 www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(20)30044-4/fulltext
7Mind the Gap
technology to ensure less transmission and fewer Scotland’s public health challenges
deaths per capita; minimise or prevent restrictions
on business activity and community life; and better
protect livelihoods, employment and prosperity.6 Lowest life expectancy in
Western Europe 11
By investing in data, digital and technology in
Scotland 79 years old
health & social care to harness its full potential we
Belgium 81 years old
can ensure we are better prepared for the public
Germany 81 years old
health challenges, crises and disruptions of the
Denmark 81 years old
future. COVID-19 and our response to it will have
Netherlands 82 years old
a lasting impact, with lag effects and unintended
Wales 82 years old
consequences which we need to prepare for too.
Northern Ireland 82 years old
Norway 82 years old
If we act now to close Scotland’s Data Gap between
Spain 82 years old
the health & social care data we have and the health
England 83 years old
& social care data we need, there will be big social
France 83 years old
and economic gains for everyone. If we fail to, the
Portugal 83 years old
price will be high for us and for future generations.
Italy 83 years old
Sweden 83 years old
The pandemic has been a social, economic and
health crisis which has underlined that a healthy
society is essential for a healthy economy. Our
physical and mental health impacts on our wellbeing
and quality of life as individuals, our income and
productivity as workers and the public services we
Life expectancy increases have stalled in
access as citizens.7
recent years
However, even before the pandemic Scotland Life expenctancy at birth (years)
faced a series of major and escalating public health 2017-19
challenges and crises which will continue to damage 81.1
our society and the economy if they are not tackled,
preventing our nation and its people from achieving
our potential.8 9 77.1
Females
75.3
Severe inequalities in outcomes are entrenched
across Scotland, with life expectancy dramatically Life expenctancy
lower in deprived communities. Mental health issues Males has shown
from anxiety to stress to depression are affecting virtually no
69.1 improvement
increasing numbers of people, especially 1980-82 since 2012-2014
young people. The costs to families, communities
and taxpayers of long-term ill-health are high, as Source: www.nrscotland.gov.uk
are levels of obesity, alcohol misuse and substance
abuse.10
6 https://knowledge.wharton.upenn.edu/article/singapore-south_korea-taiwan-used-technology-combat-covid-19
7 www.who.int/choice/publications/d_economic_impact_guide.pdf?ua=1
8 www.gov.scot/collections/scottish-health-survey
9 www.gov.scot/binaries/content/documents/govscot/publications/corporate-report/2018/06/scotlands-public-health-priorities/documents/00536757-pd
f/00536757-pdf/govscot%3Adocument/00536757.pdf
10 www.gov.scot/collections/long-term-monitoring-of-health-inequalities
11 www.scotpho.org.uk/population-dynamics/healthy-life-expectancy/data/international-comparisons
8Mind the Gap
High levels of drug and alcohol abuse Entrenched health inequalities
1 in 4 people in Scotland consume alcohol at LGBT people are more than twice as likely to
hazardous levels 12 attempt suicide 15
Alcohol harm costs Scotland £3.6bn every Gypsy/Travellers are twice as likely to suffer
year in health & social care, crime, lost from health problems and disabilities 16
productivity and wider impacts 13
Scotland has more drug deaths per capita
than any other European country 14 Females
Good health Poor health
10%
MOST 63.3% in 75.6
deprived 35.7%
good health years
areas
Scotland has more drug deaths per capita
10%
than any European country MOST 69.3% in 69.6
deprived 30.7%
good health years
Number of deaths per million people, latest available data areas
SCOTLAND Males
ESTONIA
Good health Poor health
SWEDEN 10%
NORWAY
MOST 84.8% in 85.4
UNITED KINGDOM
IRELAND
deprived good health years
DENMARK areas
FINLAND
LITHUANIA
15.2%
SLOVENIA
AUSTRIA
CYPRUS 10%
CROATIA MOST 86.2% in 82.7
EUROPEAN UNION deprived good health years
NETHERLANDS
areas
GERMANY
LUXEMBOURG
LATVIA 13.8%
TURKEY
MALTA The unparalleled scale and intensity of the
SPAIN
BELGIUM COVID-19 crisis has exacerbated the underlying
ITALY
FRANCE
challenges of demand and capacity faced across
POLAND the health & social care sector. Our NHS is facing
CZECH REPUBLIC
HUNGARY unprecedented pressures on its finite resources,
SLOVAKIA
mature infrastructure and stretched staff. The
BULGARIA
PORTUGAL expanding role of community pharmacy is creating
ROMANIA
new challenges for the sector after under-
0 50 100 150 200 investment in its workforce and infrastructure. Social
Source: National Records of Scotland. Note: No data available for Greece care has been struggling to deal with the intensifying
pressures of meeting demand from a rapidly ageing
population.
12 www.alcohol-focus-scotland.org.uk/alcohol-information/alcohol-facts-and-figures
13 www.alcohol-focus-scotland.org.uk/alcohol-information/alcohol-facts-and-figures
14 www.nrscotland.gov.uk/files//statistics/drug-related-deaths/2019/drug-related-deaths-19-pub.pdf
15 www.stonewallscotland.org.uk/our-work/stonewall-research/lgbt-scotland-%E2%80%93-health-report
16 www.gov.scot/publications/ethnic-groups-poorest-health
9Mind the Gap
Our Report Our Vision
This independent report was commissioned by Data will fuel the global economy of the future.
Janssen UK and authored by SCDI with input from Large, complex data sets are being generated,
a Steering Group composed of representatives digitised and analysed by automation and AI to
from Janssen UK, The Data Lab, ABPI Scotland, develop rich new evidence, information and insights,
the University of Strathclyde and the Scottish opening a whole new plane of knowledge about
Government. our people, our society and our economy, as well as
enabling new and emerging technologies. Over 90%
Its conclusions have been informed and shaped of the world’s data has been generated in the past
by months of engagement with key stakeholders, two years alone as the Fourth Industrial Revolution
leaders, experts and workers from across the health gathers pace.20
& social care, data and technology sectors. We have
also listened to the insights and priorities of SCDI
members from all sectors and all geographies of the Fourth Industrial Revolution
Scottish economy. technologies
In Numbers: Our Evidence-Build Automation = Automatic working of a
machine, process or system by mechanical or
electronic devices without human intervention
5 12 27 3 58 1
Partners Meetings Interviews Focus Online Literature Artificial/Assistive/Augmented Intelligence
of the with groups with survey review = Set of techniques used to allow computers
Steering experts responses
to perform tasks normally requiring human
Group and
stakeholders
16 intelligence (e.g. visual perception, speech
members recognition, translation, decision-making)
It builds on SCDI’s other recent work in this space – Big Data Analytics = Collection, organisation
including our Automatic… For the People? (2018)17, and analysis of high volume, velocity and
Building a World-Leading AI and Data Strategy variety of data sets to systematically extract
for an Inclusive Scotland (2019)18 and Upskilling information or insights to inform decision-
Scotland (2020)19 reports – which identified the making
major challenges and opportunities for Scotland in
the Fourth Industrial Revolution and presented a Connected and Autonomous Vehicles =
roadmap towards an AI Strategy for Scotland, which Vehicles which utilise advanced AI and sensors
is now being developed. to undertake all aspects of dynamic driving
tasks in all conditions without input from a
In this report we propose an ambitious new vision driver
for data, digital and technology in health & social cont/-
care in Scotland. We identify the major priorities and
urgent actions which must be taken together by the
Scottish Government, NHS Scotland, industry and
the other service providers and stakeholders across
the sector as part of the new national Data Strategy Data-driven insights can inform and shape
due to be published later in 2021. policymaking and decision-making by governments,
17 www.scdi.org.uk/policy/automatic-for-the-people
18 www.scdi.org.uk/policy/ai-and-data
19 www.scdi.org.uk/policy/skillsleadershipgroup
20 http://download.microsoft.com/documents/en-us/sam/bsadatastudy_en.pdf
10Mind the Gap
ethically and securely harness data-driven insights
Digitisation = Restructuring and and innovations to create jobs, support cutting-edge
transformation of processes or operations with research and attract inward investment, delivering
digital technologies (e.g. computers, software, big social and economic gains for everyone in
internet- and cloud-based services) Scotland.
Internet of Things = Networked devices or But health & social care in Scotland today faces a
sensors connected via the internet to collect, Data Gap between the health & social care data we
send and receive citizen-generated data (e.g. collect, utilise or share and the health & social care
via wearables) or clinician-generated data (e.g. data we need and could collect, utilise or share.
hospital equipment)
We believe Scotland can build on its strengths to
Nanotechnology = Design, manufacture and close the Data Gap and become a world leader
application of materials on a very small scale, in the fifth wave of public health. Our vision is
including in the discovery and development of of a health & social care sector transformed by
new medicines harnessing the technologies of the Fourth Industrial
Revolution, utilising data, digital and technology
Precision Medicine = Medicine personalised to deliver big social and economic gains so that
to the individual characteristics, especially Scotland’s public health is among the best in
genetic profile, of each patient to deliver ‘the Western Europe by 2040.
right drug, for the right patient, at the right
time’
A Fifth Wave of Public Health? 21
Smart Hospitals = Facilities which embed new
data, digital and automated technologies into 1 Structural – e.g. public works like clean
their design, operations and delivery of care water, sewers, drainage
2 Biomedical – e.g. early scientific progress in
vaccines, antibiotics
businesses, scientists, workers, consumers and 3 Clinical – e.g. tackling lifestyle-related
citizens alike. In every sector – not least health & diseases
social care – ethical and secure data-driven insights 4 Social – e.g. tackling inequalities, social
can be harnessed to develop new innovations, determinants of health
design new products and services and improve 5 Technological – e.g. Big Data & Digital
outcomes. Health
Big Data can be utilised to monitor the effectiveness
of all interventions along the care pathway. Big Scotland’s world-class academics, researchers and
Data can be utilised to develop new medicines entrepreneurs, together with our universal, publicly
and technologies, as well as design new forms of owned NHS, provides a globally unrivalled platform
care, such as personalised and precision medicine. for innovation and competitiveness. Our NHS is
Whether generated by health & social care at the heart of Scottish life with strong support
professionals and service providers or by citizens, across society, politics and the economy, with a
patients and service users themselves, Big Data shared commitment to make sure it is fit for the
provides real-world evidence which can complement future. Scotland has a renowned life sciences sector,
evidence from randomised controlled trials and a burgeoning tech sector and a pharmaceutical
give us richer knowledge about outcomes. We can industry contributing £2.5bn to the Scottish
21 Adapted from https://pubmed.ncbi.nlm.nih.gov/21256366
11Mind the Gap
economy, 5,600 direct jobs and £575m in exports.22 possible with robust and transparent governance
Scotland attracts a third more UK public research arrangements.
funds than our population share would suggest.23
Researchers and industry are primarily interested
However, the pace of progress elsewhere, from the in insights from aggregated, anonymised data at a
Baltics and Scandinavia to East Asia, means that regional and national level, rather than identifiable
Scotland must strive to keep up by raising the level health & social care data at an individual level which
of our ambition, the scale of our investment and the could breach personal privacy. The NHS Charter
pace of our action. Other countries’ faster and more of Patient Rights and Responsibilities must be
effective responses to COVID-19 have reflected respected, including the ‘right to privacy and for my
their more advanced and more mature data, digital personal health information to be protected when
and technology capacities in health & social care.24 using NHS services’.25
In the global recovery from the pandemic, Scotland Personal health and social care data – whether
has a narrow window of opportunity to establish generated by health & social care professionals
itself as a world leader and to win the global race for and services providers or citizens, patients and
investment, jobs and inclusive growth to boost our service users themselves – should only be used by
economy. the NHS, direct providers, service users or those
seeking to develop innovations for patient benefit.
Appropriate governance arrangements need to be in
Big Data can be harnessed to… place to ensure privacy, security and custodianship
by the NHS, patients and service users to build
J Save lives and deliver better outcomes understanding, trust, support and agency. Data must
for patients and service users be trustworthy and trusted.
J Improve public health, wellbeing and
productivity Our Pillars
J Deliver value and protect the long-term
future of the NHS This report is structured around four pillars, which
J Build an infrastructure which attracts we have identified as supporting our vision, and
inward investment which must rest together upon a strong foundation
J Create high quality, high skill jobs in of trust and transparency:
health & social care, data science,
technology and innovation Strategy
Scotland’s national strategy needs to deliver an
ambitious, collaborative and innovative national
Our Values approach to harnessing data to transform health &
social care which maximises social and economic
The trust and support of citizens, patients and gains.
service users is essential to achieve our vision.
Public awareness of and sensitivity to data privacy Culture & Leadership
and security issues has grown in recent years after Scotland’s political and health & social care
high-profile controversies about the misuse of leadership need to drive change by building an
personal data. Personal health & social care data ambitious and collaborative national culture of
must be ethical, secure and anonymised as far as innovation in data, digital and technology.
22 www.abpi.org.uk/publications/the-economic-contribution-of-the-pharmaceuticals-sector-in-scotland
23 www.gov.scot/binaries/content/documents/govscot/publications/research-and-analysis/2015/10/delivering-innovation-through-research-scottish-govern-
ment-health-social-care-research/documents/00488082-pdf/00488082-pdf/govscot%3Adocument/00488082.pdf
24 https://knowledge.wharton.upenn.edu/article/singapore-south_korea-taiwan-used-technology-combat-covid-19
25 www.nhsinform.scot/care-support-and-rights/health-rights/patient-charter/the-charter-of-patient-rights-and-responsibilities
12Mind the Gap
Skills
Scotland needs to invest in reskilling, upskilling and
lifelong learning to develop a health & social care
workforce better equipped to harness data, digital
and technology.
Infrastructure
Scotland needs to modernise and upgrade health &
social care infrastructure to build a single national
data architecture which integrates systems, enables
ethical data sharing and creates secure digital health
records.
Chapter 1 asks: What and Why? What is the Data
Gap? Why should closing it be a national priority?
What would be the social and economic gains for
everyone in Scotland?
Chapters 2, 3, 4 and 5 ask: How? How can we close
the Data Gap? What do we need to do to maximise
the social and economic gains for a healthy society
and a healthy economy? What should be the
priorities of the new Data Strategy for Health &
Social Care?
13Mind the Gap
14Mind the Gap
CHAPTER 1
Data Saves Lives, Time &
Money: Social & Economic
Gains of Closing the Data Gap
Mind the Gap interventions along the care pathway can deliver
truly holistic health & social care insights.2
Scotland’s Data Gap is about the health & social
care data the sector collects, utilises or shares Scotland’s Data Gap
today, and the health & social care which it needs
to collect, utilise or share to improve public health
Health & Social Care
data we collect, utilise or share
V
and to enable new and emerging technologies to be
harnessed.
Some areas of health & social care in Scotland are
acknowledged to be relatively data rich. Primary Health & Social Care data we need and
care has high-quality data on millions of patients. could collect, utilise or share
The project to build a National Digital Platform for
health & social care aims, in time, to connect all of
Scotland’s health and care data for all patients and The rollout of the Test and Protect strategy and
service users.1 the Protect Scotland app during the pandemic has
demonstrated the power of data to save lives, time
However, across the sector data collection needs to and money. Data has been vital in efforts to monitor,
be improved and expanded, and data needs to be suppress and prevent the transmission of COVID-19
better utilised in a consistent way with common data – including identifying outbreaks, tracing contacts,
standards to enhance health & social care and scale- managing resources, increasing digital service
up innovation nationally. Scotland needs to better accessibility and rolling out vaccines to priority
utilise existing health & social care data and to groups.3
close the Data Gap across large parts of the system.
Real-world and citizen-generated data, together Consistent, high quality aggregated and anonymised
with randomised controlled trials evidence, in data can be analysed and interpreted to review
relation to the effectiveness of medicines and other effectiveness to better inform clinical decisions
1 https://nds.nhs.scot
2 Scottish Government’s Data Scoping Taskforce (2018) Medicines Use and Digital Capabilities – Building capability to assess real-world benefits, risks and value
of medicines: Towards a Scottish Medicines Intelligence Unit
3 www.protect.scot
15Mind the Gap
about care, prevention, prescriptions, value of Last year’s inquiry into the supply and demand of
interventions and reimbursement, as well as medicines by the Scottish Parliament’s Health and
innovation to improve drug discovery, design Sport Committee argued that an ‘almost complete
and manufacture. It is also a critical enabler for absence of useable data’ was holding back the
technologies like AI and automation. Health & social system and harming public health. It found that
care professionals could then utilise all available data there was a ‘lack of data collection and analysis
to gain new insights to help them provide better on outcomes achieved via the prescriptions of
care for patients and service users. medicines’ with the ‘impact on individual patients’
neither being sought nor examined by GPs,
pharmacists or others across primary care.4 This
lack of qualitative and citizen-generated data, and
Randomised controlled trials evidence & Real-
the failure to utilise commercial data which already
world data => Holistic health & social care
exists to benefit public health, is a major part of
insights
Scotland’s Data Gap.
The result of the Data Gap is a major knowledge
Primary, secondary, tertiary and social care data deficit in public health in Scotland, which is bad
is not yet linked to enable a fully holistic view of for patients and service users, health & social
patient experiences, journeys and intervention care professionals and our economy and society.
outcomes and to provide informed and truly Poor quality data means that we understand less
integrated health & social care. Currently, many about the people we need to help, the problems
GP surgeries, care homes and hospitals lack the they face and the effectiveness of treatments and
fundamental infrastructure required to record, track interventions along the care pathway at improving
and analyse basic patient data or to support rollout their health, wellbeing and quality of life. Closing
of digital services like NearMe. the gap would deliver big social and economic gains
for patients, service users, health & social care
Data needs to be consistent in quality, as well as professionals, NHS, government and industry.
securely connected and ethically shared across
systems throughout health & social care without
geographical, sectoral or organisational silos. A
“Accurate data is the lifeblood of good policy and
single, comprehensive digital health record for
decision-making.”
everyone in Scotland would be transformational.
Antonio Guterres
Secretary-General, United Nations
Citizen-generated data, commercial data and the
Internet of Things (IoT) could be rich sources of
valuable qualitative and quantitative data for health It is estimated by EY that the data held across the
& social care. For example, smart sensors utilised NHS across the UK could be worth £9.6 billion
to predict and prevent falls or heart attacks in every year in social and economic gains, including
at-risk or elderly people living independently or in saving lives, improving patient outcomes and
care homes. Data already collected by the private creating new jobs. For Scotland, this could represent
and third sectors, such as by wearables or service a health & social care data dividend of up to £800
providers, could be better utilised to inform clinical million every year for our society and our economy.5
decision-making, service design and the allocation
or targeting of resources at communities or groups Social Gains
most in need.
The social costs of the status quo are clear and
4 www.parliament.scot/parliamentarybusiness/CurrentCommittees/113038.aspx
5 www.ey.com/en_uk/life-sciences/how-we-can-place-a-value-on-health-care-data
16Mind the Gap
significant. Many patients and service users receive
sub-optimal health & social care due to poor quality,
What could a patient journey look like
inconsistent, or unshared data, leading to:
in the future…?
J Lower levels of happiness and wellbeing and
Having, analysing and sharing ethical, robust and
poorer quality of life. secure health & social care data will enable us to
J Higher levels of health inequalities. transform health & social care in Scotland with
J Lower levels of household income and wealth new insights and technologies:
due to economic inactivity from long-term and
chronic ill-health. J Elderly woman living alone has bad
fall. Detected – or even predicted and
Data saves lives. Quantitative data about patient prevented – by IoT wearables or sensors
health and qualitative data about patient lived in her smart home. Home IoT calls 999
experience and quality of life enriches and expands and notifies family or neighbours
the information which doctors, nurses, pharmacists, J Nearest available ambulance is
carers and other health & social care professionals Connected and Autonomous Vehicle
can draw on to deliver better care. Data enhances (CAV). Assigned rapidly by algorithm
prevention, prescribing and treatments to be more J Paramedics have immediate (but
effective. Currently, many patients and service users permissions- and time-limited) access to
have poorer outcomes or will even die because patient’s single, comprehensive digital
their data is not collected or shared. The use of health record via tablets. Informed of
data globally in the fight against COVID-19 has existing conditions, previous illnesses,
demonstrated the power of data to save lives, from allergies and other patient needs
identifying and suppressing outbreaks to supporting J Paramedics collect patient. CAV
rollout of vaccines to at-risk priority groups.6 ambulance is tracked. Tablets
communicate information and data (e.g.
Data empowers the health & social care workforce condition, estimated arrival time) to A&E
to design and deliver precision medicine or care en route
personalised to patient or service user needs. A J Hospital’s AI system identifies and
single, comprehensive digital health record for secures staff and resources required,
everyone in Scotland could deliver a truly integrated, ready for patient in A&E. Manages most
informed care and a seamless, holistic patient productive division of labour
experience by storing all lifetime patient data in J Automated devices record and
one place. The creation of digital health records organise patient-doctor interactions in
requires complex integration of data sets, systems hospital. Removes need for notetaking.
and architecture across health & social care, as well Automatically added to digital health
as greater investment in other Fourth Industrial record
Revolution technologies to maximise gains for J Two-way AI-powered language
patients or service users. Data can enable service translation if required
change, accelerate technological transformation and J Scans, x-rays or tests enhanced with
underpin a truly seamless patient journey. automated image interpretation using AI
or informed by anonymised Big Data and
patient’s digital health record
cont/-
6 https://knowledge.wharton.upenn.edu/article/singapore-south_korea-taiwan-used-technology-combat-covid-19
17Mind the Gap
care in some parts of the world – with the
J Emergency surgical procedures (or lab collection, sharing and utilisation of the right data at
work) conducted with assistance of the right time.
robotics
J Clinical judgements on most effective Data is critical for evidence-based public policy,
options for care and treatment informed enabling the identification and analysis of health
by patient data and insights from inequalities to inform the design and delivery of
anonymised, aggregated data more effective, targeted interventions. Health
J Patient prescribed by doctors and inequalities are significant and entrenched in
pharmacists with more effective Scotland between different communities on the
precision medicine shaped by AI- basis of deprivation, gender, ethnicity and sexuality.7
automated drug discovery, real-world
data and randomised controlled trial Economic Gains
evidence in laboratories locally and
globally A healthy society is essential for a healthy economy.
J Patient discharged from hospital. Workers who are less physically or mentally healthy
Returns home after recovery. are less productive. Learners who are less healthy
Community care and support delivered achieve lower levels of education. A healthier
in-person by carers, via phone and population provides employers with access to a
digitally by video consultation. larger talent pool for their workforce. Ill-health can
J Automated collection of quantitative force individuals to leave the workforce and the
data (and remote monitoring of) on labour market. Illness and injury therefore often
patient’s recovery from smart housing result in lower household income and earnings
and wearables potential, or higher living costs.
J Qualitative citizen-generated and
clinician-generated data on patient’s
recovery, lived experience and quality “Poverty is both a cause and a consequence
of life collected in-person, via phone or of poor health. Poverty increases the chances
digitally by video consultation with GP of poor health. Poor health, in turn, traps
surgeries or community pharmacy communities in poverty.”
J All data added to digital health record.
Patient (and doctor or carer) can Health Poverty Action
access in real time online or via secure
smartphone app. Data harnessed for
prediction and prevention. Patient can
Scotland’s public health is among the worst in
choose to share her data with family
Western Europe, contributing to:
J Patient also goes online or uses
smartphone app for supported self-
J Lower levels of productivity and inclusive
care and self-management of long-term
growth.
health. Accesses further advice or makes
J Higher levels of economic inactivity and
appointments
sickness absence.
J Unprecedented demand pressures and higher
All these examples are technically feasible with costs for the NHS and Scottish Exchequer.
today’s proven and emerging technologies – and
some have already become reality in health & social Economic inactivity has historically been stubbornly
high in Scotland, reducing employer access to the
7 www.gov.scot/collections/long-term-monitoring-of-health-inequalities
18Mind the Gap
labour, skills and talent they need. Around a third of
the economically inactive are not in work or looking “The introduction of disciplines such as
for work due to long-term sickness, disability or improvement science and process engineering
temporary sickness or injury.8 based on modern data analytics rather than on
the pursuit of targets, could transform Scotland’s
The NHS alone has lost more than 1.3 million NHS into one of the most effective and efficient
working days due to COVID-19.9 The cost to systems in the world.”
employers of lost working days and weakened
productivity due to the pandemic is expected to Prof. Sir Harry Burns
reach several billion pounds. Even in more normal former Chief Medical Officer for Scotland
times, an estimated 141.4 million working days were
lost due to sickness or injury across the UK in 2018,
representing an average of 4.4 days per worker or
2% of total working time. The sickness absence rate The value of the European data sector was over
in Scotland is the highest of the nations and regions €300 billion in 2016 – of which a substantial
of the UK at 2.4%. The average cost to employers is proportion was directly or indirectly connected to
around £570 per employee every year.10 health & social care – representing nearly 6.1 million
jobs and 2% of Europe’s GDP. The sector doubled in
Health is the single largest area of public spending size to 4% of the continent’s economy by the end of
in Scotland at over £15 billion. Since devolution 2020.14 The size of the potential prize for Scotland
in 1999, its proportion of the Scottish Budget has is immense if we can achieve world leader status
grown relentlessly. The Scottish Government now and export our expertise and technological solutions
spends 42% of its total budget on the NHS.11 This across Europe and beyond.
raises significant concerns and ‘major risks’ about
its long-term financial sustainability, according to Scotland has a narrow window of opportunity to
Audit Scotland. Health & social care spending will establish itself as a world leader in Big Data in
have to increase by to £20.6 billion in the next five health & social care and in the global race for inward
years to meet the scale of rising demand in the face investment, jobs and inclusive growth to boost our
of an ageing population. A shortfall of £1.8 billion is economy. The conclusions of the Logan Review in
forecast.12 Reducing costs needs to be a priority to 2020 underlined how far Scotland still must go to
reinvest savings in staff and infrastructure, ease the nurture a mature Scottish technology ecosystem.15
fiscal burden on other public services and secure the
long-term future of the NHS. We need to learn from and keep pace with the
progress of other leading countries, including those
Research by Dell EMC estimates that better use which have responded quickly and effectively to the
of information and harnessing Big Data Analytics challenges of COVID-19, including those in different
could reduce NHS costs across the UK by between contexts and with different political and health
£16 billion and £66 billion every year. Big Data systems.
could deliver between £1.3 billion and £5.4 billion
in savings for NHS Scotland, a staggering 9% to In Singapore, South Korea and Taiwan, dense
38% of its current total budget, which could be testing networks have been deployed and a wide
reinvested across health & social care.13 range of diverse data sources from across society
utilised to track, trace and successfully suppress the
8 www.gov.scot/collections/labour-market-statistics
9 www.heraldscotland.com/news/national-news/18744789.1-3-million-nhs-working-days-lost-covid-england-figures-show
10 www.ons.gov.uk/employmentandlabourmarket/peopleinwork/labourproductivity/articles/sicknessabsenceinthelabourmarket/2018
11 www.gov.scot/budget
12 www.audit-scotland.gov.uk/report/nhs-in-scotland-2019
13 https://volterra.co.uk/wp-content/uploads/2014/09/Final-EMC-Volterra-Healthcare-report-web-version.pdf
14 https://ec.europa.eu/digital-single-market/en/news/final-results-european-data-market-study-measuring-size-and-trends-eu-data-economy
15 www.gov.scot/publications/scottish-technology-ecosystem-review
19Mind the Gap
transmission of the virus.16 nationally integrated, publicly owned, universal
system, it could provide a holistic picture of patient
Estonia has developed a nationwide system of experiences and journeys by harnessing diverse
electronic patient records and handles 99% of data.
prescriptions online.17 Finland has created Findata,
a single source for public health data, and a Our world-class research universities have renowned
single regulatory authority for access to health & life sciences expertise which is a critical part of
social care data for research and innovation open the jigsaw.23 Scotland’s pharmaceutical industry
to patients, service users, health & social care contributes £2.5bn to the Scottish economy, 5,600
professionals, academics and industry.18 direct jobs and £575m in exports, with strong
potential for further growth.24 The Edinburgh
Singapore is home to a dense network of health and South East Scotland City Region Deal has an
tech start-ups which are developing innovative new exceptional ambition and vision of Edinburgh as the
products and services and make the city-state South ‘data capital of Europe’.25 The tech sector is worth
East Asia’s Big Data hub.19 Denmark is building £4.9 billion to the Scottish economy, with over
a national register of the genomes of its entire 100,000 people employed as tech professionals
population.20 Canada and China are pioneering the across all sectors.26 The health tech and data sector
first ‘all-digital’ hospitals.21 could be Scotland’s next key growth sector to rival
FinTech.
Scotland must therefore raise the level of its
ambition, the scale of its investment and the Building Trust, Meeting Expectations
urgency of its action to be a global leader. Investors,
innovators and researchers will only be attracted The social and economic gains of Big Data must
to Scotland if we can demonstrate our status as a be clearly communicated to the public. Data saves
global first mover with a proposition unique in its lives, time and money, supporting our health and our
maturity and opportunities. They will be attracted to wealth by attracting inward investment, creating jobs
wherever they can access high quality, consistent, and fuelling inclusive growth.
aggregated and anonymised Big Data on a large
scale and at a national level to discover new The trust of citizens, patients and service users is
medicines, design better treatments, manufacture essential to enabling the transformation of health &
innovative products or test pioneering approaches. social care with Big Data. Public awareness of and
Scaling and sharing data is essential to developing a sensitivity to data privacy and security issues has
successful health data economy.22 increased significantly in recent years after many
high-profile scandals in which personal data has
Scotland can build on the progress being made and been misused or privacy violated by firms. Personal
our existing strengths, which are considerable, as health & social care data must be ethical, secure
it designs and delivers its first-ever Data Strategy and anonymised as far as possible with robust and
for Health & Social Care. NHS Scotland is in unique transparent governance arrangements.
institution globally with its unrivalled ability to
collect and harness Big Data. As the heart of a
16 www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(20)30044-4/fulltext
17 https://e-estonia.com/solutions/healthcare/e-health-record
18 www.findata.fi/en
19 www.edb.gov.sg/en/business-insights/market-and-industry-reports/the-singapore-healthtech-ecosystem.html
20 https://eng.ngc.dk
21 www.bouygues-es.com/buildings/humber-river-first-fully-digital-hospital-north-america
22 www.ncbi.nlm.nih.gov/pmc/articles/PMC6284141
23 www.gov.scot/binaries/content/documents/govscot/publications/research-and-analysis/2015/10/delivering-innovation-through-research-scottish-govern-
ment-health-social-care-research/documents/00488082-pdf/00488082-pdf/govscot%3Adocument/00488082.pdf
24 www.abpi.org.uk/publications/the-economic-contribution-of-the-pharmaceuticals-sector-in-scotland
25 http://esescityregiondeal.org.uk
26 www.skillsdevelopmentscotland.co.uk/media/46258/scotlands-digital-technologies-summary-report.pdf
20Mind the Gap
Nevertheless, patient expectations are changing support online. Patients want to know that health &
and rising in the fifth wave of public health. Health social care professionals are empowered with all the
& social care needs to recognise and respond to the insights they need to make informed decisions.
needs, concerns and expectations of patients and
service users. There is a growing movement across
the UK which articulates the case for change and Understanding Patient Data
suggests increasing public support.
Understanding Patient Data work to
democratise knowledge about health data
Patients in Scotland want to share their issues and opportunities among patients and
data and want to use technology 27 clinicians, while pressing for a better and more
systemic use of ethical and secure patient data
J 77% support their data being shared across health and social care.
J 86% happy for their data to be shared www.understandingpatientdata.org.uk
across primary care team
J 61% happy for their data to be shared
across whole NHS Patients and service users overwhelmingly support
J 79% would use wearable devices their data being shared ethically and securely for
to monitor activity levels and blood their benefit and for the benefit of others – in fact,
pressures and allow information to be they expect it and are often shocked to learn that it
transmitted direct to GPs is not. Even basic data or information is not always
J 90% want to use technology to order shared by services or colleagues across health &
repeat prescriptions social care or even within the NHS to the detriment
J 82% want to make appointments online of care and the damage of patients. Patients are
J 76% would like to receive test results often frustrated by having to repeat information or
digitally retell their stories to multiple professionals within
J 69% happy to have a telephone the same organisation due to a failure to share
consultation and 52% by video call appropriate data.
J 82% want to use digital resources to
access information.
Human Rights Charter for Technology
There is a mandate for change. Levels of support
and Digital in Social Care
for data sharing and digital approaches are high.
Scottish Care, the voice of Scotland’s
Patients want to be able to access their data,
independent care sector, has developed a
schedule appointments and get more information or
human rights-based charter to guide the
sector’s employers and employees as they
respond to the ethical and practical issues
use MY data
raised by the Fourth Industrial Revolution.
use MY data is an independent movement
The Charter is based on 17 principles and 5
of patients, relatives and carers which is
values – Participation; Accountability; Non-
educating, amplifying and harnessing the
Discrimination; Empowerment; Legality
patient voice – including through powerful
– to ensure consensual, ethical, secure and
patient testimonies – to use data to improve
transparent use of data for the benefit of
healthcare for everyone.
service users.
www.usemydata.org
27 www.parliament.scot/parliamentarybusiness/CurrentCommittees/113038.aspx
21You can also read
